I finally had a good cry after I talked to the Rebif folks, and again with my husband, yesterday. I guess the grieving and uncertainty are finally hitting me. I feel better, now, and I still plan on living life to the fullest.
Jan, I'm so sorry to hear of your dad's passing. Big hugs...
UF2, as frustrating as the VA is, don't forget to live. My brother has a lament - "There's too much life getting in the way of living!" So, 18 yrs C&S, he's living, darnit! Good luck with your remodel, don't let the b**tards get you down, but keep being the squeaky wheel, too!
Hugs to All,
Guitar_grrrl
frustration, frustration, anger, numbness ...
the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then going along with that path. now i know it isn't me but a disease, at least clinical tests prove that.
the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder.
the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues all they saw were the depression and ct's and very low MRIs that made no mention of demyelinating disease. so i now i know why they looked at me so funny, like "where the heck you coming from". so add another notch of frustration to my belt on that one.
some years back the symptoms got way worse and the frustration shot through the roof. most people just thought i was weak and depressed. how was i to know it was fatigue and such associated with a disease. and of course the VA treated me as a head case. so who in this situation wouldn't withdraw some?
lack of intimacy desires and performance fears due to things there began not to work well some years ago had contributed to my social withdraw. i now have a med for that and it helps. but i never know how my body is going to feel and this effects the mental part or is that the other way around? you folks know what i mean.
i go to support groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors.
frustration, frustration, anger, numbness ...
the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then, going along with that path and always knowing it was leading nowhere, that i was just being patronized and brushed aside. now, i know it isn't me but a disease, at least clinical tests prove that.
the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder to deal with.
the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues with a doctor all that doctor saw were the listing for depression, ct's, and very low MRIs that made no mention of demyelinating disease the way they worded it. so, i now i know why they looked at me so funny, like "where the heck are you coming from vet". so add another notch of frustration to my belt on that one.
some years back the symptoms got way worse and the frustration shot through the roof at the sametime. most people just thought i was weak and depressed...at least that is how i took their actions and words towards me. how was i to know it was fatigue and other such symptoms associated with a disease? and of course the VA, as usual, treated me as a head case. let me ask, who in this situation wouldn't withdraw socially a bit?
lack of intimacy desires and performance fears due to things began not to work well some years ago had contributed to my social withdraw also. hard to be intimately fun when one doesn't feel well. i now have a med for that and it helps some. but, i never know how my body is going to feel and this effects the mental part of life or is that the other way around? you folks know what i mean.
i quit drinking 18.9 years ago & still go to support/fellowship groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, and i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors so we a bond with that. i email other veterans who have the same uphill battleground and that helps to share each other's story. when your own family doesn't truly believe you, its a bit hard when i think about it. although, i don't blame them. being in "demyelinating disease of the cns" limboland is just too difficult to explain to anyone.
recently, the local neuro suggested i speak with a psych who specialized in neuro-illnesses. he mentioned something about ptsd too. i said i would try that and asked him to suggest one. he couldn't because he didn't know any!! you read that right! LOL i told him considering the VA and my history with them trying to diagnosis my CNS problem, why would i trust an avg shrink with no experience in demyelinating disease and what that puts a patient through? he said it was a shame i didn't trust the VA. so, another notch in the frustration belt.
some days i'm just lost because i feel so downright fatigued, lack of real sleep, some balance issues, the pain, feeling i'm going nuts, my nervous system being out of sync, etc., and then out of the blue i feel like a 20yo kid full of life. but i know it won't last but i try to do something fun on those days.
i'm going to start some part time work soon. after leaving an analyst job in norcal two years ago, scores of resumes and interviews here, just getting to say "i'm going to work" will help my psych out a bit. i think i blew some of those interviews due my lack of energy, losing a word in mid-sentence and trying to keep up. like i said, i can't plan which days i'll have an interview and with temps here getting over 110 in the Summer, a 3-piece suit, well, is it any wonder i look fatigued? LOL
i seem to just be rambling now but it is so much easier to write than to speak and this is good for me to just jot some feelings down here.
i'm going to put in some effort to do a little upper body workout this AM, then get a buddy and go to my townhome i'm remodeling and hang some closet racks. i'll start moving in this week. this demyelinating disease merry-go-round i've been on over the years hasn't killed my spirit but i admit it has knocked me down many times. luckily i've been able to get back up into the fight, try to see this through, and on my good days/nights, still have some good fun.
Hi all - good thing it's hard for me to type - should keep this a reasonable length. Being both transparent AND introspective, I have no trouble being in touch w/ my feelings. It's been a long, tough journey due to multiple diseases combined with an abusive husband.
I've always been the strong one - the one that does everything, handles everything, helps everyone else w/ their problems etc. No one has been able to think of me any differently, which is partly my fault. It's a role I'm used to, but also like. I'll admit to the pain, but not the need for help. If I say I need help, it's still hard for me to accept it, or sit back and let others do things I feel I "should" do.
I think I've been in partial denial because some of my conditions are terminal, yet I don't seem to truly accept it - and the conditions that are the most serious, people haven't heard of. People have heard of MS, but not Sceroderma, or pulmonary hypertension etc. It gets frustrating! Even family (not much of one left) doesn't understand how sick I am.
One of the hardest things is my kids - they were so young when I was a dynamo - a real physical machine. They will always remember me as sick. They view me as strong, but I grieve their not having known me before. I grieve the loss of that person I still find myself trying to be, as well. All of my "good" years were spent trying to save a marriage with an evil, abusive man - 27 years! BUT - that pain brought me back to the Lord, and meant I raised my kids to love Him too. So those weren't the only "good" years.
Adversity has made me a better person - that I believe strongly. But sometimes I get so overwhelmed by my pain, and the unbelievably broad scope of my illnesses. There's not a single organ or system not greatly affected by disease. Then I hear, "you look good, you must be better!" - but I don't ever get better. I've lost friends who are willing to help and "be there" for the short term - but when it never ends and I can't reciprocate or be my "old self" they fade away. I'm no longer asked to lead groups at church, or teach etc. When I need contact and support the most - I have none.
I've lost faith in many people. Most are self serving and don't want to focus on others. Plus, lives are so busy, no one has the margin to help even if they want to. THAT I believe is a terrible societal shift. Everyone needs spare time to give to their children, neighbors, and friends, but too often it's not there. Everyone's working to get bigger homes and more toys - it's a shame because everyone suffers. There's no one who has the time to help me - even within the church. They've helped, but it's not often and hard to organize.
Sadness, anger, bitterness, frustration - all are felt when I think of how much I still have to offer. My mind still works (sort of lol) - it's just my body that's unreliable. I don't want to be put out to pasture, yet feel I have been to a degree. I am thankful for this site and all the caring people here. It would seem it takes having a chronic illness to appreciate its effect.
Well, my hand can't take anymore one finger pecking. Thanks to those who "listened" - I enjoyed reading everyone else's thoughts as well.
Blessings, Jan
It's almost bone chilling that this post came forward. Several hours after I wrote this post about emotions, I learned that the love of my life, for all my years on this earth, died unexpectedly.....my precious daddy. Don't have to tell you all what my emotions were like on the evening of January 13, 2008.
DJ, I wonder if my Daddy is trying to tell me something? Maybe he and God are trying to tell me that "I" am the one that is NOT dealing with my emotions. I haven't taken the proper time to grieve. Probably because I am so happy that my daddy is in Heaven with my mother. He was emotionally abused by his second wife. His death was a release. Sad for the void it left in my life, but I know that my daddy is still with me in spirit.
I love you girl. Always,
Heather
Wow! After lurking and participating for 7 months, now, I know I've seen this thread before. I'm finally ready to say something.
I tell people I'm done freaking out over my diagnosis, but I still freak out inside, worrying about not playing my guitar (my hands spaz now and then), riding my bike on those long, challenging, mountainous routes ( I stick pretty much to the flats, now).
I worry about losing my strength.
I've suffered depression off and on since I was 10. Therapy is a blessing, and now, I can cope well, and even though sometimes I have suicidal ideations, I know how to deal with them and extinguish that flame, too. Now I worry about the Interferons, and I've told my neuro about my past depressions. We'll discuss this more tomorrow.
I'm REALLY angry! Why me?!? My husband is still in denial to some degree, and that pi**es me off, too. He did ask about DMDs the other day during a walk, and I look at this in a positive way.
On the other hand, I'm inspired, too. The woman who summited Everest last month is a rock star in my mind. I'm still riding, I'm paddling the Westwater Canyon (Colorado River) in an inflatable kayak in August. I'm just going to keep on keeping on...
I still haven't had a good cry over this, yet, and I wonder if that makes me weird?
One day at a time.
Love to all,
Guitar_grrrl
WOW! UNBELIEVABLE ! I just love the way life works... You know I don't even care if this post you started over 1 & 1/2 years ago isn't going be read by any one.
My emotions are all over the place, every time I get on "the fast track" of losing more ground it feels like the "Morning Process" starts over again.. Every one seems to think I am strong, but I feel like I have been kick to my knees and they aren't holding me up. The past two years have very rough, kind of like being in the middle of a storm that keeps raging & gets worse rather than clearing up.
I am scared, ticked off, I am exhausted because almost as soon as I fall to sleep the spasms get worse, now I even "up-chuck while sleeping which is very dangerous. It happened for the second time Tonight, the first time was Monday morning, plus the battery of test are very difficult because of having to lay on my back which is now broken in three new places as well as having several collapsed vertabrae's.
To be completely HONEST I am ready for the cr#@ to be over. Please don't misunderstand I would never end "IT" myself, not that the thought hasn't been around. I could never put my Children, Grandchildren through that & the rest of the people who share my world.
The other side of these dark feelings are the lights that Shines from the Love &Support that surrounds me. It is said time & time again that Our Lord never gives us more than we can handle but I must admit that I question it.
I feel like I am not making a whole lot of sense so I'm going to sign off...Hugs going out to all of you, {{{~!~}}}